Africa is characterized by a high burden of disease and health system deficits, with an overwhelming and increasing demand for palliative care (PC). Yet only one African country is currently considered to have advanced integration of palliative care into medical services and generalized PC is said to be available in only a handful of others. The integration of PC into all levels of a health system has been called for to increase access to PC and to strengthen health systems. Contextually appropriate evidence to guide integration is vital yet limited. This qualitative systematic review analyses interventions to integrate PC into African health systems to provide insight into the ‘how’ of PC integration. Forty articles were identified, describing 51 different interventions. This study found that a variety of integration models are being applied, with limited best practices being evaluated and repeated in other contexts. Interventions typically focused on integrating specialized PC services into individual or multiple health facilities, with only a few examples of PC integrated at a population level. Four identified issues could either promote integration (by being present) or block integration (by their absence). These include the provision of PC at all levels of the health system alongside curative care; the development and presence of sustainable partnerships; health systems and workers that can support integration; and lastly, placing the client, their family and community at the centre of integration. These echo the broader literature on integration of health services generally. There is currently a strong suggestion that the integration of PC contributes to health system strengthening; however, this is not well evidenced in the literature and future interventions would benefit from placing health systems strengthening at the forefront, as well as situating their work within the context of integration of health services more generally.
Background: Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.
Methods: Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.
Results: Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.
Conclusions: The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.
Based on interviews with Senegalese people living in four contemporary urban neighbourhoods, who had experienced the death of an adult family member, we explore how the research challenged and surprised the White, British members of the research team. Such challenges help to shed light on some dominant, taken-for-granted understandings of ‘bereavement’ based in ‘Western’ perspectives. The surprises include how the death was discussed and explained; patterns of family living and the implications for how individuals responded to the death; the emotional significance of particular religious expectations; and the emotional implications of material hardships. After exploring how interviewees responded to the deaths in Senegal, we consider how these responses compare with expectations and taken-for-granted assumptions about ‘bereavement’ in the contemporary UK. We conclude by discussing the implications for bereavement support and professional practice, in relation to diverse responses to death.
Je me souviendrai toujours de ce patient de 24 ans atteint d'un cancer du foie. C'était en 2008. Il était au stade terminal dans le service de médecine interne de l'hôpital de Kibagabaga, un hôpital de district situé dans la capitale Kigali. Il souffrait horriblement d'une douleur sévère, mais le règlement sur l'utilisation des opiacés était un vrai parcours du combattant. Pour une seule ampoule de morphine de 10 mg, il fallait rédiger une prescription au stylo rouge, et la signature du pharmacien, de l'anesthésiste et du chef de service. Je n'oublierai jamais sa mère. Elle m'avait suivi après le tour de salles et supplié à genous de donner à son fils un médicament qui le ferait dormir pour qu'il ne se réveille plus. Les cris et les pleurs de son fils étaient traumatisants et insupportables pour les autres patients. Mais aussi pour elle et sa famille, bien sûr, qui ne pouvaient pas accepter que leur proche finisse sa vie avec cette douleur inhumaine que les médecins étaient incapables de traiter. Cette histoire a marqué un tournant majeur dans ma vie professionnelle. J'ai compris que, malgré les années passées à la faculté de médecine, j'avais encore beaucoup à apprendre sur la prise en charge des patients souffrant de maladies incurables et de leur famille. Trois jours plus tard, mon patient mourut dans des douleurs atroces, entouré par un personnel soignant frustré de n'avoir pu utiliser d'opiacés pour soulager ses souffrances.
[début de l'intro.]
Burial rituals are symbolic activities that encourage the expression of grief as a positive way to heal while helping to confirm the reality of death. In the Caribbean, consisting of multiple distinct islands and histories of colonization, how individuals are buried on each island depends on the historical intermingling of the colonizer’s Christian religion and African (spiritual) rituals. Each island has distinct burial rituals that are a blending of Christian and African religious or spiritual cultures. This article highlights the distinct burial rituals on the Caribbean islands of Barbados, Haiti, and Trinidad and how its historical past has shaped present burial rituals and its significance to the African Caribbean grieving processes.
AIDS has devastated communities across southern Africa, leaving many children orphaned. Grandmothers are considered ideal caregivers because of cultural expectations of intergenerational care, and because they have not been decimated by AIDS to the same extent as younger adults. However, these grandmothers, who currently carry the majority of the burden of care for AIDS orphans, are themselves aging and dying. I argue here that in Lesotho, the caregiving demanded of grandmothers late into their lives not only alters kin relations for the living but has increasingly made a “good” death unachievable for elderly caregivers.
All cancer care must target the needs of the whole population, not just the few who reach curative services. This paper will refer to palliative care in Uganda and in the countries now aware of the need for palliative care. Human Rights Watch has declared that doctors who are aware that we can control cancer pain and are not doing it or taking steps to make it happen, are considered to be torturers (Human Rights Watch (2009) Please, do not make us suffer any more... Accessed 11 July 2019). As Uganda celebrates 25 years since the introduction of palliative care, is it now time to harvest the principles that have been applied in policies and services from the Government of Uganda? This has brought Uganda to the same level as the developed world as stage 4b palliative care (PC) services . These policies and services need to be promoted to caring governments in Africa, and suitably adapted to the needs of each African country, with a plan for them to progress over the next 5 years. These steps will ensure standards, economic viability and cultural appropriateness. Let palliative care reach at least 50% of cancer patients in need in Africa by 2023.
PURPOSE: A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample.
METHODS: Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings.
RESULTS: Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death (P values .001) but better on five concerns, including interpersonal and religious/spiritual concerns (P values .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns (P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings.
CONCLUSION: The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.
BACKGROUND: Palliative care has been successfully integrated into many Muslim-majority countries, most frequently in urbanised areas with developed health care systems. Less is known as to how the concept of palliative care is perceived by Muslim populations and health workers in rural, resource-limited contexts.
AIM: This study seeks to explore whether the principles of palliative care are congruent with the perspectives of health professionals, families and communities in rural areas of the Islamic Republic of Mauritania, in West Africa.
DESIGN: A qualitative research design was employed underpinned by a constructionist paradigm. Data were collected through 31 interviews and 8 focus groups. Data were analysed using thematic analysis.
SETTING/PARTICIPANTS: A total of 76 participants were recruited from across rural Mauritania; 33 health care professionals, 12 recently bereaved family members and 31 community leaders. Data collection occurred during training events in the capital and visits to villages and rural health posts.
RESULTS: Three major themes were identified. First, there is a perceived lack of congruency between an illness which limits life and the strong belief in destiny. The second theme describes the perceived barriers to communication of issues relating to palliative care. Finally, a good death is described, framed within the interplay of religious faith and cultural practices.
CONCLUSION: The palliative care ethos is viewed positively by the majority of participants. The need to understand and respect a Muslim individual's faith does not diminish our obligation to personalise palliative care provided for them and their family.
Un modèle d’accompagnement des souffrances pédiatriques, fondé sur une activité culinaire guidée par une infirmière, a été expérimenté en Afrique. L’approche soignante permet d’affermir les liens psychoaffectifs entre l’enfant et son proche privilégié, et d’apaiser les angoisses autour de la dyade mère/enfant. Une situation clinique de fin de vie autour d’un enfant pris en charge dans une structure hospitalière au Cameroun illustre cette démarche.
BACKGROUND: The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.
METHODS: This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children's Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.
RESULTS: Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC-the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won't be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.
CONCLUSIONS: The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
Les soins palliatifs peuvent-ils exister dans un continent où règne le dénuement ? Ne peut-on envisager autrement l'accompagnement des mourants ? Etre avec, parler, entourer physiquement, sont, aussi, une manière d'aider à franchir le passage vers le pays des ancêtres.
The NCCN Framework aims to provide adapted guidelines for low- and middle-resource countries to improve the experience of patients with cancer. In particular, the NCCN Frameworks for Adult Cancer Pain and Palliative Care and were designed to help expand access to pain management and palliative care for patients in low-resource countries. The NCCN Framework is one of several tools that can improve cancer care in the developing world. The NCCN Harmonized Guidelines for Sub-Saharan Africa, a collaborative effort between NCCN, American Cancer Society, Clinton Health Access Initiative, and African Cancer Coalition, was developed to harmonize NCCN recommendations with local guidelines across Africa and to make best use of available services and resources.
CONTEXT: To date, there is no study comparing palliative care (PC) development among African countries.
OBJECTIVE: To analyze comparatively PC development in African countries based on region-specific indicators.
METHODS: Data were obtained from the APCA Atlas of PC in Africa and a comparative analysis conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the WHO public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52/54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator.
RESULTS: Surveys were received from 89% (48/54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia.
CONCLUSION: Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
Introduction: Palliative care (PC) services in the African region need to adapt to manage rising numbers of patients with cancer or other life-limiting conditions. Mobile phone use in healthcare delivery (mHealth) is at an early stage of development for PC, but may provide new approaches to supporting patients regionally, particularly those with non-communicable diseases.
Methods: We conducted an online survey of 51 PC providers across 21 countries in the African region to identify: (i) current mHealth use in PC service delivery; (ii) potential barriers to mHealth use; and (iii) provider priorities for research development.
Results: mHealth approaches were reported across 71.4% of services in which respondents were based. Barriers to mHealth research include patients not having access to phones, mobile network access, and limited access to expertise and hardware required for mHealth.
Research: priorities were identified which included exploring ways of incorporating mHealth into patient care and ensuring access and relevance of mHealth for patients and health professionals.
Discussion: mHealth approaches are present across PC services in the African region, but so too are barriers to their use. Further work is required to explore how existing mHealth activities might be further developed and aligned with priority areas for PC development. Crucially, user engagement that seeks to understand the preferences and priorities of patients with PC needs, their caregivers, and those involved in the provision of PC should remain central to these efforts.
CONTEXT: Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC.
OBJECTIVES: To identify key factors affecting PC development in African countries from in-country PC experts' perspectives.
METHODS: Sixteen PC experts from seven African countries undertook semi-structured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison.
RESULTS: Emerged themes included: drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC Resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education, lack of standardization in implementation, limited availability of and/or accessibility to morphine, poverty and disease burden, and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed.
CONCLUSION: The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates that built on existing strengths to maximize opportunities. However, the current approach is high-risk in terms of its sustainability and strategies for maximizing existing resources and growing infrastructure support are needed moving forward.
Les auteurs de cette étude ont examiné une hypothèse jusqu’alors restée théorique, selon laquelle les rituels de trépas (assistance affective au mourant, actes rituels laïcs ou religieux, discours d’adieu du mourant) faciliteraient le processus du deuil des survivants. L’étude s’est déroulée au Togo et a porté sur 162 personnes veuves (dont 88,3% sont des femmes et 11,7% des hommes) d’un âge moyen de 56,04 ans. La durée du deuil est de 112,52(ét =11,69) mois. Les résultats ont montré que près de 75 % des participants ont assisté le mourant de par leur présence avant qu’il ne meure. Dans 23,5% des cas, le dernier passage du mourant a été soutenu par des rituels (prières aux ancêtres, sacrement de l’onction des malades, prières non sacramentales). Les principaux thèmes émergeant du discours d’adieu sont : l’acceptation de la mort imminente, des recommandations à propos de l’éducation des enfants, la transmission des valeurs d’unité familiale, de respect et de réussite, les paroles de consolation, l’échange de pardon, la promesse de protection dans l’Au-delà en faveur des survivants. Cependant, pris isolément, ni le discours ni les actes religieux, ne se sont révélés statistiquement associés à l’intensité du deuil. Mais, lorsque l’on contrôle successivement l’interaction entre l’assistance portée au mourant, le fait qu’il ait tenu un discours d’adieu et la durée du deuil, l’on note un deuil moins compliqué chez le conjoint survivant (beta = -1.21, p<.005). De plus, l’assistance donnée au mourant est corrélée avec la perception d’un changement psychosocial positif après le deuil (r = .173, p< 0.05). Les auteurs en concluent que l’assistance affective, donnée par un proche du mourant, est ce qui donne sens aux actes rituels et aux dernières paroles de ce dernier. Enfin, la durée du deuil doit être prise en compte pour évaluer les effets bénéfiques des rituels de trépas sur le processus du deuil. Ils en appellent aux rôles irremplaçables de la famille dans la phase de la fin de vie de leur proche mourant, et aux professionnels en soins palliatifs à favoriser un espace d’échange pouvant libérer les paroles suspendues du mourant.
Background: Indicators specific to the African context are important to measure palliative care (PC) development accurately.
Objective: To describe the process used to develop a set of PC macroindicators for Africa.
Design: Open-ended interviews on national PC development were conducted with five African Country Experts. Indicators were rated (1–4) by 14 Country Experts for validity and feasibility. An additional 11 interviews were conducted to ensure indicator saturation. Indicators scoring =3 proceeded to a modified two-round RAND/UCLA Delphi with global experts on PC development (International Committee). Finally, indicators were ranked by the project team.
Setting/Subjects: Sixteen country experts from 7 African countries and 14 International Committee members.
Results: One hundred three indicators were rated by Country Experts, and 58 proceeded to the Delphi. Thirty-eight indicators were rated as important by the International Committee, and the project team ranked 19 of these as most important. Service indicators (n = 6) included the number of types of services most important in Africa (e.g., hospices, home based) and coverage. Policy indicators (n = 4) included the existence of PC in national policies, guidelines, and budget and a responsible person. Education indicators (n = 3) consisted of inclusion of PC in medical and nursing curricula and recognition as a specialty. Medicine indicators (n = 4) focused on morphine availability, consumption, and prescribing barriers. Vitality indicators (n = 2) reflected the existence of a national association and its activity.
Conclusion: The process to develop African-specific PC indicators resulted in 19 indicators that were used to measure PC development as a comparative baseline for development in African countries.